What Happens If You Lose Your Autism Diagnosis?

The mother of an autistic child responds to news of possible updates to the diagnosis of autism.

Last week, The New York Timeswrote about a study showing that changes to the diagnostic criteria for autism would exclude large numbers of people currently diagnosed as autistic. Many adults with autism and parents of autistic children are extremely concerned. It's hard to understand the kerfuffle over this announcement if you don't deal with autism as a part of your daily life, so hopefully I can explain why we're all so freaked out.

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An "expert panel" was appointed by the American Psychiatric Association to assess the impact of the proposed changes, particularly on those people currently considered either "high-functioning autistic" or having Asperger's Syndrome. Using clinical data from 1993, the study determined that:

• One quarter of people diagnosed with classic autism in 1993 would not meet the revised criteria.

• Three-quarters of people with Asperger's Syndrome would not qualify for a diagnosis.

• 85 percent of those diagnosed with PDD-NOS ("pervasive developmental disorder, not otherwise specified") would not qualify for a diagnosis.

While that is very scary to those of us who already go to battle every day to ensure that our children are getting the services they need (not to mention the adults with these diagnoses), it's important to understand that not everyone agrees with those numbers. The study uses clinical data from 1993, which means doctors weren't even asking questions that would line up with the new diagnoses. The most disturbing part, though, is this quote from the Times article:

"The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. 'We would nip it in the bud.'"

Why didn't I think of that? How about if we also stop calling diabetes "diabetes," and then we could totally end the ballooning numbers of Americans being diagnosed with Type II Diabetes? Let's call it "sub-clinical sweet tooth," and then everything will be just fine.

When I look at the actual proposed changes to the DSM-V autism criteria, it's clear to me that my son will still "qualify" as autistic. However, even if his diagnosis were to change, his need for support would not. Regardless, his services could most certainly change.

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Why are so many people freaked out?

Here's what could change for children and adults who "lose" their autism diagnosis:

Home- and community-based services. Most states have waivers for home-based or community-based programs for people with developmental disabilities. Many children and adults with autism would lose access to these programs without their autism diagnosis. Adults on the spectrum, for example, could lose health services, adult day care, transportation, meals, and respite for caretakers.

Insurance coverage. Twenty-six states have laws specifically requiring insurance companies to provide autism treatment services. No diagnosis? Limited coverage may still be available for things like speech therapy or mental health therapy, but if you're doing something really autism-specific such as Applied Behavioral Analysis (ABA), you're going to be out of luck.

Social Security. Some autistic adults and children qualify for Supplemental Security Income (SSI), depending on both income and severity of disability. My best guess is that if a person is profoundly autistic enough to qualify for SSI, he or she is probably in the clear in regards to the DSM-V. However, the possibility of losing SSI certainly exists, and this would financially devastate many families. Losing SSI might also trigger the loss of Medical Assistance for some people.

Medicaid / Medical Assistance. We would lose supplementary medical assistance. In the Commonwealth of Pennsylvania, even if you don't meet the income requirements for medical assistance, children with autism are eligible through a waiver program. (Pennsylvania is one of only four states to have this specific waiver.)

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School. I'm confident we would not lose our son's school-based services, which currently include speech therapy, physical therapy, and special education instruction. A child's Individualized Education Plan (IEP) is supposed to be based on need, not diagnosis. While a diagnosis of autism may get the ball rolling, it's not a necessary part of the IEP. Also, an autism diagnosis doesn't automatically qualify you for an IEP. Most school districts re-evaluate special education students every three years, and it's likely that many school districts across the country would decide these kids no longer qualify for services. Tons of parents will be in for major battles.

ADA Protection. Children and adults on the autism spectrum are protected from discrimination under the Americans with Disabilities Act. Without the autism diagnosis, some adults will lose workplace accommodations. Without those accommodations (along with community-based services), some adults might become unemployable.

Community support. Currently, I receive a lot of emotional support by being part of a community (both online and in real life) of other families dealing with autism. If my son wasn't technically autistic, I'd feel awkward about looking to this community for support.

I know people are concerned about the increasing number of people being diagnosed with autism, especially because the costs associated with treatment are so high. However, not treating autism would actually cost our society astronomically more. Changing a label will not nip the very real needs of people with autism "in the bud."

Joslyn Gray is the author of the humor blog stark. raving. mad. mommy. She writes about parenting four fabulous, hilarious kids with a quirky mix of autism, ADHD, and anxiety.

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